Perinatal & Neonatal Loss Audrey Wrobel, LSW
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Perinatal Neonatal Loss Audrey Wrobel, LSW (sheher) Social Worker Bereavement Coordinator Disclosures No members of the planning committee, speakers, presenters, authors, content reviewers andor anyone else in a position to control
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01
Perinatal & Neonatal Loss Audrey Wrobel, LSW (she/her)
Social Worker & Bereavement Coordinator<br>
Social Worker & Bereavement Coordinator<br>
02
Disclosures No members of the planning committee, speakers, presenters, authors, content reviewers and/or anyone else in a position to control the content of this education activity have relevant financial relationships with any companies whose primary business is producing, marketing, selling, reselling, or distributing healthcare products used by or on patients.<br>
03
Objectives Build skills to effectively and compassionately care for patients who experience perinatal loss.
Identify resources available to families who experience perinatal loss.
Gain a better understanding of grief in perinatal loss.
Understand how to support families who experience pregnancy after loss.<br>
Identify resources available to families who experience perinatal loss.
Gain a better understanding of grief in perinatal loss.
Understand how to support families who experience pregnancy after loss.<br>
04
Perinatal and Neonatal Loss Perinatal loss: loss at any stage of pregnancy or a newborn death.
Ectopic pregnancy, early term losses/miscarriage (< 20w gestation), stillbirth (> 20w gestation), newborn death (< 28 days of life).
Neonatal loss: death of infant > 28 days of life.
Parents and their families may grieve for the loss of a child even if there is not a physical body to see and to hold.
“She wasn’t just expecting a baby; she was expecting the rest of her life.” 4 Gunderson Health System, 2023
Baby Loss Advisor Baby Doulas, 2023<br>
Ectopic pregnancy, early term losses/miscarriage (< 20w gestation), stillbirth (> 20w gestation), newborn death (< 28 days of life).
Neonatal loss: death of infant > 28 days of life.
Parents and their families may grieve for the loss of a child even if there is not a physical body to see and to hold.
“She wasn’t just expecting a baby; she was expecting the rest of her life.” 4 Gunderson Health System, 2023
Baby Loss Advisor Baby Doulas, 2023<br>
05
Perinatal and Neonatal Loss Complicated and Layered Grief Loss of…
A Person/Child
A Lifetime
Hopes, Dreams and Plans
Ability to Actively Parent
Watching Partner/Family with the Baby
Family Constellation
Control of Body 5<br>
A Person/Child
A Lifetime
Hopes, Dreams and Plans
Ability to Actively Parent
Watching Partner/Family with the Baby
Family Constellation
Control of Body 5<br>
06
Baby or a Part of Life? Limbo & Kobler, 2010; Côté-Arsenault & Dombeck, 2001 6 75%<br>
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Perinatal Loss at Magee Units provide excellent bereavement support and aid in memory-making
MWH Social Work provided support and resources during admission
No formal anticipatory, outpatient, or post-discharge grief support offered at MWH
“Grief reactions may be compounded by secondary losses, such as the loss of support from the child’s medical team” (Lichtenthal et. al., 2015)
Abrupt end to care experienced as abandonment
Contact from healthcare professionals has an impact on parents’ bereavement adjustment (Raitio, Kaunonen, & Aho, 2015) 7<br>
MWH Social Work provided support and resources during admission
No formal anticipatory, outpatient, or post-discharge grief support offered at MWH
“Grief reactions may be compounded by secondary losses, such as the loss of support from the child’s medical team” (Lichtenthal et. al., 2015)
Abrupt end to care experienced as abandonment
Contact from healthcare professionals has an impact on parents’ bereavement adjustment (Raitio, Kaunonen, & Aho, 2015) 7<br>
08
Bereavement Coordinator Engage with perinatal loss families
Provide bereavement support, grief education, and resources
Refer to appropriate organizations/providers
Disposition planning
Provide long-term outpatient follow-up (24 months post-loss)
Perinatal loss 20+ weeks gestation
Not yet including TFMR and TA patients
Coordinate Magee’s Perinatal Loss Remembrance Ceremony
Spring and Winter ceremonies 8<br>
Provide bereavement support, grief education, and resources
Refer to appropriate organizations/providers
Disposition planning
Provide long-term outpatient follow-up (24 months post-loss)
Perinatal loss 20+ weeks gestation
Not yet including TFMR and TA patients
Coordinate Magee’s Perinatal Loss Remembrance Ceremony
Spring and Winter ceremonies 8<br>
09
Perinatal Supportive Care Neonatologist, Neonatal Nurse Practitioner, Social Worker
Support during the pregnancy
Formation of parent-child bond
Anticipatory Grief
Resources
Intrapartum Care Planning
Birth and Parenting Preference Plan
Comfort Care 9<br>
Support during the pregnancy
Formation of parent-child bond
Anticipatory Grief
Resources
Intrapartum Care Planning
Birth and Parenting Preference Plan
Comfort Care 9<br>
10
Identifying a Loss Patient 10 Room Cards Cuddle Cots
Crib that has been outfitted with a cooling system which slows the natural death process to allow families to spend more time with their baby<br>
Crib that has been outfitted with a cooling system which slows the natural death process to allow families to spend more time with their baby<br>
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Supporting the Bereaved Family: Saying “Hello” 11 Encourage parents to parent
Seeing and holding baby
Dressing and changing baby
Bathing baby
Tucking in baby
Singing, telling stories, dancing
Baptism/Prayer Service
Introduce baby to others
Participate in memory-making Memory-making
Pictures
Handprints/footprints
Locks of hair
Molds
Creative outlets (bead bracelets, drawings, artwork)<br>
Seeing and holding baby
Dressing and changing baby
Bathing baby
Tucking in baby
Singing, telling stories, dancing
Baptism/Prayer Service
Introduce baby to others
Participate in memory-making Memory-making
Pictures
Handprints/footprints
Locks of hair
Molds
Creative outlets (bead bracelets, drawings, artwork)<br>
12
Memory-Making 12 Magee works with many generous donors who provide us with kits for memory-making.
Still Remembered Project
Bridget’s Cradles
Queen B Project
Mr. Boxes
Magee Knitters
Comfort Cub (NICU): weighted bear<br>
Still Remembered Project
Bridget’s Cradles
Queen B Project
Mr. Boxes
Magee Knitters
Comfort Cub (NICU): weighted bear<br>
13
Pictures History of photography
Trained nurses can offer to take pictures of the baby, parents with the baby, and other family members with the baby.
Pictures are offered even in the presence of significant anomalies.
Some photos can be printed immediately and given to families. Photographs are sent to Now I Lay Me Down To Sleep for editing and distribution to families. 13<br>
Trained nurses can offer to take pictures of the baby, parents with the baby, and other family members with the baby.
Pictures are offered even in the presence of significant anomalies.
Some photos can be printed immediately and given to families. Photographs are sent to Now I Lay Me Down To Sleep for editing and distribution to families. 13<br>
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Pittsburgh Bereavement Doulas Provide physical, emotional, and informational support during labor and birth
Early-term Loss (miscarriage), Stillbirth, Life-Limiting Diagnosis
FREE service
CONTACT:
Director, Heather Bradley: 412-901-9568
www.pittsburghbereavementdoulas.com 14<br>
Early-term Loss (miscarriage), Stillbirth, Life-Limiting Diagnosis
FREE service
CONTACT:
Director, Heather Bradley: 412-901-9568
www.pittsburghbereavementdoulas.com 14<br>
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Communication Strategies Goal is not to “fix”; goal is to be with and support grief.
DOs:
Use baby’s name, compliment baby’s features
Remain genuine and demonstrate empathy
Supportive statements: “My heart aches for you right now”. “I’m so sad for you.” “I’m here to listen.”
“I wish” statements: “I wish your baby didn’t have this condition.” “I wish things were different.”
Use concrete terms: death, died, will die
Compassionate silence
Appropriate physical touch (with consent)
Identify and include support persons 15 Gunderson Health System, 2023<br>
DOs:
Use baby’s name, compliment baby’s features
Remain genuine and demonstrate empathy
Supportive statements: “My heart aches for you right now”. “I’m so sad for you.” “I’m here to listen.”
“I wish” statements: “I wish your baby didn’t have this condition.” “I wish things were different.”
Use concrete terms: death, died, will die
Compassionate silence
Appropriate physical touch (with consent)
Identify and include support persons 15 Gunderson Health System, 2023<br>
16
Communication Strategies (cont.) DONTs:
Ignore baby in the crib
Moralizing statements
“Everything happens for a reason.”
“At least” statements
“At least you’re young and can have more children.” “At least you have another baby.” (twin loss)
Dominate the conversation
Make choices for the family 16 Gunderson Health System, 2023<br>
Ignore baby in the crib
Moralizing statements
“Everything happens for a reason.”
“At least” statements
“At least you’re young and can have more children.” “At least you have another baby.” (twin loss)
Dominate the conversation
Make choices for the family 16 Gunderson Health System, 2023<br>
17
Respectful Disposition Autopsy is free to the patient at Magee (genetic testing is not free)
Emma’s Footprints, TEARS Foundation (provides financial assistance) 17 UPMC Policy: HS-WH0002<br>
Emma’s Footprints, TEARS Foundation (provides financial assistance) 17 UPMC Policy: HS-WH0002<br>
18
Taking Their Baby Home Historically common for families to care for their deceased loved ones at home
Amish
Therapeutic benefits:
Expressing their love
Introduce to friends and family
Creating shared memories
Process:
Contact funeral home for “Burial Transit Permit” OR local Registrar (they need copy of the death certificate to issue)
Health.PA.Gov to download “List of Local Registrars”
Copy given to family for transport
Morgue has small coffins to give to families and unit can supply ice 18 Pittsburgh Bereavement Doulas, 2023<br>
Amish
Therapeutic benefits:
Expressing their love
Introduce to friends and family
Creating shared memories
Process:
Contact funeral home for “Burial Transit Permit” OR local Registrar (they need copy of the death certificate to issue)
Health.PA.Gov to download “List of Local Registrars”
Copy given to family for transport
Morgue has small coffins to give to families and unit can supply ice 18 Pittsburgh Bereavement Doulas, 2023<br>
19
Grief in Perinatal and Neonatal Loss Grief is a normal, healthy, unique, and universal response to loss
Physical, behavioral, affective, cognitive, spiritual responses
“Grief is not a sign of weakness…it is the price of love.”
PPD screening for bereaved parents
Multitude of emotions vs stages
Finding continued bond with the deceased
Grief can be delayed but not denied
Disenfranchised grief
Providing tools vs solutions
Support system, hydrating/fueling, sleeping, movement 19 Gunderson Health System, 2023
Baby Loss Advisor Baby Doulas, 2023<br>
Physical, behavioral, affective, cognitive, spiritual responses
“Grief is not a sign of weakness…it is the price of love.”
PPD screening for bereaved parents
Multitude of emotions vs stages
Finding continued bond with the deceased
Grief can be delayed but not denied
Disenfranchised grief
Providing tools vs solutions
Support system, hydrating/fueling, sleeping, movement 19 Gunderson Health System, 2023
Baby Loss Advisor Baby Doulas, 2023<br>
20
Grief: Perinatal and Neonatal Loss (cont) Grief and the family
Mother vs Father grief
Grandparent grief
Sibling Grief
Highmark Caring Place
Supporting families
Telling their story
Finding ways to honor their baby
Don’t automatically or too freely offer to medicate their pain
VALIDATE
Ensure they have memories
Connection to resources: support group, grief counselor 20 Gunderson Health System, 2023
Baby Loss Advisor Baby Doulas, 2023<br>
Mother vs Father grief
Grandparent grief
Sibling Grief
Highmark Caring Place
Supporting families
Telling their story
Finding ways to honor their baby
Don’t automatically or too freely offer to medicate their pain
VALIDATE
Ensure they have memories
Connection to resources: support group, grief counselor 20 Gunderson Health System, 2023
Baby Loss Advisor Baby Doulas, 2023<br>
21
Pregnancy After Loss 21 Tips for HCP
Pause: Take a moment to review history; be fully present; provide reassurance and take time to answer questions (may have to repeat)
Acknowledge: Ask about previous loss; understand the complexity of the relationship between the patient and her body (may have a hard time trusting her body – guilt)
Listen: Take time to understand emotional needs; convey empathy
Support: Provide emotional support, one baby does not replace another; connect to support groups Being pregnant and welcoming a new baby can be a bittersweet time to many parents who have experience pregnancy or infant loss
Disbelief, doubt, emptiness, excitement, fear, guilt, hope, joy, regret, relief Pregnancy After Loss Support, 2023<br>
Pause: Take a moment to review history; be fully present; provide reassurance and take time to answer questions (may have to repeat)
Acknowledge: Ask about previous loss; understand the complexity of the relationship between the patient and her body (may have a hard time trusting her body – guilt)
Listen: Take time to understand emotional needs; convey empathy
Support: Provide emotional support, one baby does not replace another; connect to support groups Being pregnant and welcoming a new baby can be a bittersweet time to many parents who have experience pregnancy or infant loss
Disbelief, doubt, emptiness, excitement, fear, guilt, hope, joy, regret, relief Pregnancy After Loss Support, 2023<br>
22
How Can We Help? We Can Never Say the “Right” Thing
Companioning, Dr. Alan Wolfelt
Companioning is about curiosity; it is not about expertise.
Companioning is about walking alongside; it is not about leading or being led.
Companioning is about being present to another person’s pain; it is not about taking away or relieving the pain.
Companioning is about going to the wilderness of the soul with another human being; it is not about thinking you are responsible for finding the way out. 22 Heustisk, Jenkins, & Wolfelt, 2005<br>
Companioning, Dr. Alan Wolfelt
Companioning is about curiosity; it is not about expertise.
Companioning is about walking alongside; it is not about leading or being led.
Companioning is about being present to another person’s pain; it is not about taking away or relieving the pain.
Companioning is about going to the wilderness of the soul with another human being; it is not about thinking you are responsible for finding the way out. 22 Heustisk, Jenkins, & Wolfelt, 2005<br>
23
Questions? wrobelaj2@upmc.edu / 412-641-1178 23<br>
24
References Baby Loss Advisor Baby Doula Workshop. (2023). www.babylossfamilyadvisors.org
Côté-Arsenault, D., & Dombeck, M. T. (2001). Maternal assignment of fetal personhood to a previous pregnancy loss: Relationship to anxiety in the current pregnancy. Health Care for Women International, 22(7), 649-665.
Gunderson Health System. (2023). Perinatal Death. www.resolvethroughsharing.org
Heneke. (2019). Tips for healthcare providers when treating the mom experiencing pregnancy after loss (PALS). Pregnancy After Loss Support. www.pregnancyafterlosssupport.org
Heustis, J., Jenkins, M., & Wolfelt, A. D. (2005). Companioning at a time of perinatal loss: A guide for nurses, physicians, social workers, chaplains and other bedside caregivers. Companion Press.
Levick, J., Fannon, J., Bodemann, J., Munch, S., & Ahern, K. (2017). NICU bereavement care and follow-up support for families and staff. Advances in Neonatal Care, 17(6), 451-460.
Lichtenthal, W. G., Sweeney, C. R., Roberts, K. E., Corner, G. W., Donovan, L. A., Prigerson, H. G., & Wiener, L. (2015). Bereavement follow‐up after the death of a child as a standard of care in pediatric oncology. Pediatric blood & cancer, 62(S5), S834-S869.
Limbo, R., & Kobler, K. (2010). The tie that binds: Relationships in perinatal bereavement. MCN: The American Journal of Maternal/Child Nursing, 35(6), 316-321.
Newcastle Health System. (2023). The Butterfly Project. https://www.neonatalbutterflyproject.org/
Pittsburgh Bereavement Doulas. (2023). www.pittsburghbereavementdoulas.com
Raitio, K., Kaunonen, M., & Aho, A. L. (2015). Evaluating a bereavement follow‐up intervention for grieving mothers after the death of a child. Scandinavian Journal of Caring Sciences, 29(3), 510-520. 24<br>
Côté-Arsenault, D., & Dombeck, M. T. (2001). Maternal assignment of fetal personhood to a previous pregnancy loss: Relationship to anxiety in the current pregnancy. Health Care for Women International, 22(7), 649-665.
Gunderson Health System. (2023). Perinatal Death. www.resolvethroughsharing.org
Heneke. (2019). Tips for healthcare providers when treating the mom experiencing pregnancy after loss (PALS). Pregnancy After Loss Support. www.pregnancyafterlosssupport.org
Heustis, J., Jenkins, M., & Wolfelt, A. D. (2005). Companioning at a time of perinatal loss: A guide for nurses, physicians, social workers, chaplains and other bedside caregivers. Companion Press.
Levick, J., Fannon, J., Bodemann, J., Munch, S., & Ahern, K. (2017). NICU bereavement care and follow-up support for families and staff. Advances in Neonatal Care, 17(6), 451-460.
Lichtenthal, W. G., Sweeney, C. R., Roberts, K. E., Corner, G. W., Donovan, L. A., Prigerson, H. G., & Wiener, L. (2015). Bereavement follow‐up after the death of a child as a standard of care in pediatric oncology. Pediatric blood & cancer, 62(S5), S834-S869.
Limbo, R., & Kobler, K. (2010). The tie that binds: Relationships in perinatal bereavement. MCN: The American Journal of Maternal/Child Nursing, 35(6), 316-321.
Newcastle Health System. (2023). The Butterfly Project. https://www.neonatalbutterflyproject.org/
Pittsburgh Bereavement Doulas. (2023). www.pittsburghbereavementdoulas.com
Raitio, K., Kaunonen, M., & Aho, A. L. (2015). Evaluating a bereavement follow‐up intervention for grieving mothers after the death of a child. Scandinavian Journal of Caring Sciences, 29(3), 510-520. 24<br>